Monday, November 9, 2009

I know, I know, it's been a while since I blogged. I haven't forgotton how though. I vow to be better about this blogging thing, if anything it's good for the soul.

My blog tonight is about loving someone with CF. I have to send out KUDOS to all those who love someone with CF. It's not an easy life and I struggle daily with the fact that I invited this person to be a part of my life. Was I selfish? Of course I'm told that the other person makes that choice to be in your life. I made sure all the facts were presented before anything of a serious nature developed but none the less it still feels like a selfish thing. I don't think any of us realize what we will have to live through and gloriously the longer we live now the more challenges there seems to be like transplant. I say glouriously because when I was diagnosed 41 years ago I was only expected to live to age 8. Imagine that and how hard it was on our parents! That's another blog though and one that will be written soon. Living with CF is hard enough for the person who has it and then add on the challenges of a relationship it adds up to alot of stress and sometimes alot of heartache. I've had my heart broken because of it, at least that's what I'm lead to believe. It's alot to swallow when your talking about long term relationships and marriage. Lots of implications emotionally, physically as well as financially. I can't even imagine making that decision myself, I didn't get the choice. I give my gratitude to those who have loved me because it took alot of themselves to do it and some of them couldn't and that's okay too. I can't have a resentment because they made the choice not to live it with me and at least they tried. I know now that my husband has what it takes and I'm blessed to the nth degree. He doesn't seem to blink an eyelash when it comes to the coughing, the pills, the breathing treatments, the pysical therapy, the endless IV's and hospitalizations and all the wonderful GI symptoms that CF brings along with it and even though transplant has brought a whole new set of problems he still doesn't blink an eyelash. It's like God made him especially for me and it's hard to believe that I'm that special. All my love's have shaped me to who I am today but he is ultimately who I was shaped to be with, I believe that with all my heart. I have too, what else can I believe? He has amazing courage and amazing faith and ANYONE who loves someone with CF has that courage and faith. Oh did I forget PATIENCE, yes patience as well. Believe it!!!!!!!

Sunday, June 28, 2009

I proclaim to all I will live my life OUTLOUD and UNAFRAID because I only have now!! Why? Must I explain? Okay! Life is all we have and now is all that any of us have and we must take advantage of the now. How do I do that? I try to not live in the past and not to worry about the future. I'm not perfect and never will be but I'm better today than I ever have been. For those who know me and know me well, I have been and always will be LOUD which means you will hear me coming and you will hear me going. Alot of you THINK I'm not afraid but I'm less afraid than I ever have been. Fear is defined in my book as "False Evidence Appearing Real". I have always been afraid of what was going to be next in my life but through trials and tribulations I have learned not to be afraid. I can face anything today as long as I believe that a power greater than myself, which I chose to call God, will see me through anything including the "ultimate" fear which is leaving this life that we know exsists and moving on to the next life that we don't know exsists. Does that make sense? To me it does and that's all that matters. I believe something exsists beyond the hear and now and my belief in that keeps me strong and living the best that I can everyday because I want to be the best I can be always. I see the joy in knowing people and seeing nature and appreciating that which created it. How unique are we? How unique is nature? If you really think about it, wow, so BIG!! I can only imagine what created it all. How big is that? I am really sure that I will get through it all, even the worst, I think I already have. I will continue to be outloud and unafraid because that's who I am, believe it or not!!

Sunday, May 10, 2009

I experienced the most kind and compassionate deed a person can do. He is the most remarkable fellow in my life and I'm so lucky that he is my husband. Curious? Well I took my sister to work today and she noticed a dog laying on the side of the road. I hate to see that, it just breaks my heart. I told Roger about it and when we went to go to Lowe's he stopped to make sure the dog was dead. The people whose house the dog got hit in front of came out and asked if it was our dog, well no we said and he said he called animal control but they wouldn't come out till Mon. to pick her up. Roger didn't like that so went did our shopping and got home and unloaded and all of the sudden he came out of the house crying. He said he must go get that dog a give it a proper burial, he said it's the right thing to do! I started crying with him and we both went down and got her. Roger would not let me see her, she was apparently in bad shape. Roger wrapped in a warm old rob and put her in a box. The dog was a Black Lab around 100lbs (much like our Albee) so she wasn't small, she did have collar on but no ID. We brought her home and found a nice place to bury her and Roger sweated and groaned digging up that hole for this poor dog for about an hour. The box fit perfectly in the grave and he said a prayer and we were glad it wasn't laying on the side of the road anymore. Nothing deserves to die like that and be left alone. So many people went by that dog today and didn't think twice about checking on it. So sad. So for her, whatever your name is, RIP! Your new family is nearby and we love you without having known you. We treated you with respect and dignity as we try and do with everyone in our life.

Saturday, May 9, 2009

It's been a rough week for me. I'm seeing light at the end of the tunnel though. We went to Duke on Monday for pre-op for surgery on Tuesday. After the visit we went to our favorite place in Durham to eat, "The Cheesecake Factory" and then we went shopping at Southpoint Mall. Fun and relaxing before the big day. We had to be in pre-op at 5:30 AM and it couldn't come soon enough because I coughed all night, terrible. We got pre-admitted and waited only a moment before they came and got us to go back to pre-op holding area. They have a new waiting room and 64 new pre-op holding rooms and we were FAVORED. You are allowed one person to go back with you until you go into surgery now. That was a NO-NO before. If you sit and observe what's going on around you it really is like organized chaos. Doctors, Nurses, Transport people running around like chickens with thier heads cut off. If you listen to those around you, you will find someone is always got something worse than you do. The lady next to me had melanoma that had spread to her lymph glands and she was only in her 50's. The crotchy old man from across the hall just wasn't a happy man, complain, complain about this and that. He had a hurt back. I try to be quiet and just keep answering the questions they ask about a 100 times knowing the reasons for this happening since I had experience in the medical field and surgery. They wheel me back to my room and boy it's the smallest in the unit. I've been there before and remember everybody and we start chatting while they strap me down. The O2 mask is placed over my nose and mouth and I smell pleasant lemon and then BOOM, I'm out! I wake up and my neck is as big as a grapefruit and I'm very sore. NO COUGHING though!! Roger pops in a little later while I sleep it off and then he tells me they took the stent out and did some laser treatment around the collasped airway and they want to see me back in 2 weeks. I'm just happy I'm not coughing. What a relief!! The rest of this week is a blur. I slept alot! Still no coughing as of today! Lots of Ice Cream this week to rest my sore neck, Yummy! Lot's of TLC from my honey. There are a few perks from one unpleasant procedure. I'm NOT COUGHING!! I can't say that enough!

Thursday, April 23, 2009

It is the wee hours of the night. I can't sleep which is one of the many side effects from some of the medication I take. My brain just won't turn off tonight. I thought I'd blog to see if that helps relieve some of the burden. I have been reflecting on how I struggled before transplant and how I struggle since transplant. I feel angry sometimes about that. In all honesty, I find times of great difficulty alongside times of awe and gratitude. It changes from day to day depending on how my body feels. The richness of life has deepened immensely despite this feeling I am worthless and uncertain about why I'm still alive. I wish I could figure it out but it's so much bigger than me. A second chance gives you the incredible ability to forgive and to be more compassionate and generous to others. I find myself wanting it to be just like it was before but then I stop myself and ask isn't it better now? Of course it is, breathing is always better! The struggle is easier when you can breathe. I don't want to dampen my experience with anger, uncertainty and disappointment. I want to highlight it with happiness, accomplishment and peace. I want everyone to know who I am and what it's all about! Do you know who I am? Have you figured it out? Let me know!!

Friday, April 3, 2009

Have you pondered this question? You have to ask yourself how far down the rabbit hole do you want to go to find out? I wanna go all the way. It's easy to describe myself in adjectives but what am I really? If you believe in quantum physics then I am my atoms, but I'm also my cells. I'm also my macroscopic physiology. If you believe in creation then I am a spiritual being knowing there's this interconnectedness in the universe, that we are all interconnected and that we are connected to the universe at its fundamental level, God. I think this is as good an explanation for spirtiuality as there is. Combine quantum physics and creation and it makes up a reality. Reality is my possibility, possibility of consciousness itself, then immediately comes the question of how can I change it? How can I make it better? How can I make it happier? I can wake up in the morning, and I consciously create my day the way I want it to happen. Now, sometimes, because my mind is examining all the things that I need to get done it takes me a little bit to settle down and get to the point where I'm actually intentionally creating my day. When I create my day, and out of nowhere, little things happen that are so unexplainable, I know that they are the process or the result of my creation. You can't really explain it, and anybody who spends too much time trying to explain it is likely to get lost forever down the rabbit hole.

At the deepest subnuclear level of our reality, I believe YOU & I are literally ONE and everyone is GOD!

Thursday, March 26, 2009

"The raindrops falling down express my feeling's on life,sometimes very heavy, sometimes very light.They never seem to come and they never seem to go,but they are always there each day and every night.Life is like a storm, sometimes very strong butsometimes very calm.Why do we have storms and why do we have life?"

I wrote this when I was 13. I was in Cedar Key sitting on the docks watching it rain on the ocean. Thinking back when I used to think about what life really is I used to get an uncomfortable feeling inside and I had to immediately stop the thoughts from chattering through my mind. I still wonder what it's really all about but I don't get that uncomfortable feeling anymore and I'm able to play the tape till the end now. I believe that somehow we go from being human to being a spirtitual entity full of joy and love and warm light. We are good in all ways like our creator. I still wonder though, is this it? Is life on earth all there is? It's so easy to let the reality of the thought crash in at times! In my heart I believe so much more, that's FAITH, the very definition in my world...........Peace & Love, Amy

Saturday, March 21, 2009

Life is so tough for those of us with CF. It's full of challenges! Everybody has challenges but we seem to have more than our share. I have read lots of blogs now about individual experiences and I haven't met ANY of us that don't have lots of fight in us...we are a tough lot. I have noticed how blessed most of us have been by putting someone in our life that accept's us and love's us and support's us unconditionally. Is that the hidden blessing in being born with such a disease? Lots of people don't ever get to experience that kind of love, yet we do. It's amazing that God provides us with what we need in life to survive. The will to survive is something that I believe we will never comprehend because I don't comprehend it myself. The times I've wanted to give up and there's just that little piece of something that just pushes me on. Is that God? I have to believe that it is. I know it's real, it feels real. I'm also amazed at how God has provided people to care for our disease knowing that the outcome is not always what they want for us, but yet they fight with us and for us. What a blessed gift to have. Fight for faith in all we do and we will perservere. I know I will, I believe that with all my heart.

Sunday, March 15, 2009

I wrote today on FB what do I make of life? I make the most of everything. Well that's a lie, I try and make the most of everything, on most days I'm successful but I fail just like we were intended to do sometimes. I wish I could be perfect but as I have learned "progress not perfection". I believe God never intended for us to be perfect otherwise he would not have given the life of his son for us. My deep thought of the day, maybe for the week!

I finally started my Zyvox today and have been off Cymbalta for a day now. So far so good. Life is so good today. I love my husband so much and I love having my sister in the house with us. It's refreshing to have a young one around although we do not agree on the same TV shows, lol. I have to get up at 4:30 AM to take her to work which will be a challenge. I usually don't see dawn until 12:00 PM. I do it for love though and I know that when you do good you get good. My life is good today anyway and I anticipate that tomorrow be the same. I am alive and that's what matters the most. I'm trying to find my way with this blogging stuff. Is it a journal or a story? I guess it's what you make it. My life is an adventure and I want to try and put that to paper or well the internet in this case. Technology is marvelous thing huh?

Saturday, March 14, 2009

It was 7 years ago today that I got a phonecall from Duke. "Do you want some new lungs today?" I started crying and said "yes". I will never forget how I felt at that moment. I know exactly what I was doing and where I was and who I was with, much like 9/11. The emotions are never far away. The bittersweet envelopes my thoughts tonight. In another hospital not far away a family was saying good-bye to their 13-year-old son. I cry for them now and the tears never completely dry up. A joyous occasion? I celebrate life but at what expense? That of another, I live for him, I live because of him, God gave me a gift and I will not forget to be grateful, not for a moment, not for my lifetime. This is an ode to Bradley who gave his life for mine much like God gave his life for us. How do you say thank-you? I live my life right and savor every moment. I love to best of my ability and I never ever forget why I'm here. I will never forget all the people who prayed and supported me and who cared for me during my life but more importantly I will never forget Bradley who lives in me now. I hope he is as happy as I am and has all the peace and joy that I have in life today. My life is exactly the way I always imagined it would be, "perfect". Thank you Bradley and thank you God!

Tuesday, March 10, 2009

Well here it is, my first blog! Today brought better news about my friend Shannon, who is a transplant buddy. We are getting ready to hit our 7 year anniversary and she had some problems on a cruise this weekend. She and her husband are celebrating 10 years of marriage. Yay! I was really worried yesterday but got some much better news today. As for me, I am battling a little infection right now that has me coughing quite a bit. It's not like I haven't done that before though, LOL! Duke is keeping a close eye on me as they always do! My sister has come to live with us for awhile and we are transitioning into a new schedule. It's going rather smoothly. You will be happy to know that she has noticed that I have mellowed quite a bit over the last few years. I think I owe that to Roger being so steadfast and grounded. She got a job at Panera Bread today so I will be eating lots of bagels from now on........my weakness is asiago cheese bagels. It was a great day to be alive once again, I never take a day for granted. Till my next blog, peace & love, Amy

Roger & Amy

About Me

I was born with Cystic Fibrosis and had a double-lung transplant in 2002 at Duke University Medical Center. Despite the challenges CF and Lung Transplant have brought my way I am right where I want to be in life. I've had a successful career in Ophthalmology and I have the PERFECT husband and live in a beautiful home in the mountains of Virginia. I have serenity in my life today and am blessed beyond belief! I am so grateful to my donor family for making a difficult decision to donate life through thier tragic loss. I just can't be grateful enough!